The Unexpected Parts of Caring by Lorna Easterbrook

The unexpected parts of caring

When I meet someone with a caring role in their life – whether it’s for an older parent who’s seriously ill, a younger relative living with a disability, or a friend with cancer, there are three things that increasingly I find myself saying.

The first is that whatever you’re doing will have some good in it. It’s highly unlikely that you’re getting everything right, or that you’ve thought about every single type of support and how you might make this happen. It’s very likely that somewhere down the road as a carer that you’ll get something wrong. But what you are doing is also remarkable because you are walking side by side with someone, for as much as you can, for as long as is possible or needed. That’s not always an easy path to navigate, for either of you. So if you have a caring role of whatever nature, remind yourself from time to time that you are doing something that really matters and, importantly, that you’re doing it to the best of your ability.

The second is that, however much research you do, however much you think about what you would do, and however much you rehearse decisions or conversations with the person in whose life you have a caring role, it’s worth bearing in mind that the person doesn’t know about this script that you have – perhaps unknowingly – formulated in your head. This is the script where you suggest this, and the other person says ‘oh how wonderful, I’ll do that straight away’, and then does so. This is the script that, in your view especially, not only makes the most sense but would make life so much less fraught for everyone if it was followed.

But the problem is that the cared-for person has their own script – and you may not know it exists, never mind be following it. And then the neighbours may have a script that neither of you knows about, as does the GP, and the technician who adjusts the electric wheelchair, and the care worker, and the person in the café. And so on. We’re all working to and rewriting our own scripts – of life, of work, of family, of understanding and meaning. So sometimes the best thing is to tear up your own script and just ask the person what they think and how they feel, and what answers they might have to whatever is going on in their life; because co-writing that script is possibly one of the most empowering and supportive things each of you can do for the other.

And the third thing? Have some shared fun – as much as you can both find, even if it’s the smallest of glimmers in the bleakest of moments. With my mum, during treatment for terminal cancer, we found fun where we could. I would whizz her along hospital corridors in the much-needed borrowed wheelchair, all the while making appropriate Formula 1 engine noises from behind. We won several Grand Prix races down those corridors, sprinting from scans to chemo, from clinics to pharmacy, from the oncologist’s office to the Friends of the Hospital cafe. When hospital staff asked what she wanted them to call her, they always laughed when she told them ‘Darling’, or ‘Your Honour.’ They also laughed – as did she – when I said I wasn’t going to start showering her because she didn’t have enough money to pay the bills for the therapy I’d need as a result. And they laughed at the community hospital to which she was finally discharged when, presented with a small bowl of tinned mandarins to eat, she asked if there was anything other than goldfish on the menu.

Before that, still at home, she got stuck in the bath one day and – having ensured her modesty and safety with a towelling dressing gown and an emptied bath – it took quite a while to help her out, mostly because we were giggling uncontrollably as I got in and stood sockless behind her in the bath, squatting down to try to get some traction to lift. And then there was the day when she really couldn’t hide how scared she was, and I invented a new dance – the Scottish cancan – and proceeded to demonstrate it, including full bagpipe noises and high kicking, while she drank some tea and laughed enough until she felt she could talk calmly about how things were for her. You’ll have your own versions of fun. Some of that may feel small and quiet – the shared enjoyment of a nice slice of cake – or it may be large and noisy. But find them where you can, and enjoy. They will help you both if and when any tougher times come.